When a Kid Has a Long-Term Illness: How to Deal with School

It all looks simple, unless you happen to have a child with a chronic illness, such as severe asthma, diabetes, or cancer. For these kids, “health” may, at various points, be a day-by-day or even hour-by-hour matter. They may be fine for two weeks, but then out for three. Under the circumstances, are they supposed to be “in” school, or “out?” And if you’re a parent, what should you do?

Brian Hull, principal of Colin Powell Elementary School in Centerville, Virginia, faced these questions head-on more than a decade ago, when his seven-year-old daughter was diagnosed with non-Hodgkins lymphoma.

“As a school administrator,” he says now, “I knew what schools could and could not do. And yet, as a parent, I knew what my child needed. We had to create a whole new roadmap.”

With care from outstanding physicians at Georgetown Hospital’s Pediatric Oncology Center, Hull’s daughter completed two years of grueling treatment and went into remission. But Hull wasn’t done. “During that treatment, I felt more like I was taking from others,” he says, “And when it was done, our family made a decision to give back.” One of Hull’s first projects?His own school district.

Together with Carol Kaffenberger, PhD., Associate Professor of Counseling and Development at George Mason University and herself the parent of a cancer survivor, Hull convened a multidisciplinary team of professionals. The group understood that the problem went far beyond a few rare kids; in this country, says Kaffenberger, "21% of all students have a chronic illness, and 7% of all children have a chronic illness that is severe enough to interfere with learning and social development." How could schools reach out to chronically ill kids and their families?

Today, thanks to their committee’s efforts, Fairfax County School District—with over 200 schools, the 12th largest district in the country—maintains a handbook for all staff, and has trained teams from every one of its schools. Here are highlights of their work, together with some top recommendations for parents:

Talk to the school immediately. Both Hull and Kaffenberger stress that this is the single most important step for parents. “You can forestall so many problems,” says Kaffenberger, “by acting early on.” Hull adds, “Remember: the school can’t begin to know what to do unless families communicate what the kids are going through.”

Talk to the school often, and make this a plan up front. One of the first mistakes that well-meaning folks make is to focus on what a family might need. Instead, suggests Kaffenberger, start with a plan for how you’ll communicate, knowing that so many things can and will change. Together with your school, decide:

How will you communicate: Phone? Email? Notes?

Who will be your family’s main contact person (Kaffenberger recommends one person, rather than a group).

What would you like the school to communicate to staff and students?

Think creatively about attendance. Even with strong policies in place, says Hull, “Each case is going to be unique…but remember that people do want to help.” One important step that Fairfax schools have adopted—and that you might request in your own school—is to shift conventional ideas of “in” or “out” of school. Chronic illness, warns Hull, brings a “significant fatigue factor. A child may wake up first thing in the morning all chipper…well, at 10 o’clock, that same child may be dive bombing.” Now, thanks in large part to Kaffenberger, Hull, and their committee, a child may come for two hours a day, or two days a week during recovery time, and may receive home support for subjects missed. And when given proper data, schools can also support learners dealing with side effects like “chemo brain,” which can interfere with memory, processing, and attention.

Use technology. As medical professionals know, loneliness can be one of the toughest parts of chronic illness. Kaffenberger’s daughter, for example, endured two grueling bone marrow transplant procedures, each requiring radical isolation, before she went into remission. Today, Kaffenberger proudly sits on the board of the nonprofit organization Hopecam, which has placed more than 150 webcam and computer systems in classrooms in and around Fairfax, to help kids with cancer stay connected socially, and also to access “distance learning” opportunities. Kids may be home and sick, says Kaffenberger, but with properly placed technology, they can remain in a “circle of love” that may make all the difference.

Advocate for siblings, too. Don’t forget, says Hull, that chronic illness in one kid is still a “full family journey. In the scramble to manage the sick child’s needs, healthy children can feel enormous disruption and loss as well. Fortunately, with proper notice, this can be one of the best opportunities for school to help, whether with counseling, after-school activities, or just plan time to be “just kids,” in Kaffenberger’s words. After all, she says, “School is a place where a kid can get lots of support beyond the family.”

Today, many years after their own traumatic experiences with parenting ill children, Kaffenberger and Hull readily admit that there’s still lots of work to be done. “Rarely,” says Kaffenberger, “do these cases get the kind of attention they deserve.”

Parents, this is where you come in. Although medical treatments are more high-tech than ever, the single most important tool you will have in your work with schools is just plain, old-fashioned straight talk. Start it up immediately, say experts, and keep it up for the duration. Talk when things go badly, and talk when they go well, too. And remember that no matter what happens, a sense of community can itself be life-sustaining.

Today, more than a decade since that awful moment when his daughter was diagnosed, Brian Hull looks back with special fondness at one of those many community gifts: thousands of origami cranes that kids at his daughter's school made for their family during Marissa’s illness. Today, Hull keeps a special mobile in his office—about 250 of the colorful birds. “They remind me daily, says Hull, “of a time in my life when there were so many challenges, and so much community support. I will always have those cranes.”